Aa
Starting LDN for the first time tonight ... anyone else here taking it?
my understanding from the pharmacist is it will either work really well (for pain, sleep etc.) or do nothing at all. I'm definitely hoping I'm in the first group!
Still in limbo, but with marked decrease in health and well-being according to my doctor, he decided he would take the chance and prescribe it as an off-label use. I'm grateful that there is SOMETHING that a gp can dx since my neurologist won't. It is prescribed for a huge range of chronic conditions as well as MS -- so my limbo status isn't a problem.
Anyone else out there who has tried low dose naltrexone? Good or not-so-good stories welcome :).
Still in limbo, but with marked decrease in health and well-being according to my doctor, he decided he would take the chance and prescribe it as an off-label use. I'm grateful that there is SOMETHING that a gp can dx since my neurologist won't. It is prescribed for a huge range of chronic conditions as well as MS -- so my limbo status isn't a problem.
Anyone else out there who has tried low dose naltrexone? Good or not-so-good stories welcome :).
I had a very random side effect with Cymbalta -- mouth sores. At the low dose, just on the inside of my cheeks. It went away, but when I tapered up I ended up with sores on my tongue as well. At that level it stopped working -- there was no way I could go higher.
I'm doing the 1.5 -> 3.0 -> 4.5 mg taper (although because it's a liquid I could go up by 0.5 if I wanted).
I'm currently on amitriptyline (I don't sleep taking nortriptyline). I max out at 30 mg though with it because at higher doses I start to retain. I'm hoping I can taper off it completely ... probably wishful thinking.
I understand it may help with pain, sleep and mood -- and I need help in each of those areas.
I laughed at your snake oil comment -- that's what my MS neurologist called it when I brought it up to him about 8 months ago. I have a feeling he might boot me when he finds out I'm taking it. However he has been decidedly unhelpful through this whole process -- no longer waiting for him to be useful.
Thanks for your input!
I'm doing the 1.5 -> 3.0 -> 4.5 mg taper (although because it's a liquid I could go up by 0.5 if I wanted).
I'm currently on amitriptyline (I don't sleep taking nortriptyline). I max out at 30 mg though with it because at higher doses I start to retain. I'm hoping I can taper off it completely ... probably wishful thinking.
I understand it may help with pain, sleep and mood -- and I need help in each of those areas.
I laughed at your snake oil comment -- that's what my MS neurologist called it when I brought it up to him about 8 months ago. I have a feeling he might boot me when he finds out I'm taking it. However he has been decidedly unhelpful through this whole process -- no longer waiting for him to be useful.
Thanks for your input!
Somehow, in trying to reply. you got a best answer :D.
No, I have it made at a compounding pharmacy. I actually visited the pharmacy -- it's not local, and asked to see their compounding rooms. Very sterile.
Insurance will not cover it ... however I"m pretty desperate for pain relief that doesn't make me loopy or whatever. The electric stuff in my leg makes sleep impossible.
The liquid was supposed to be bitter -- it is, but such a small amount I just toss it back. At this point I chose liquid because too many fillers with the capsules.
We'll see.
No, I have it made at a compounding pharmacy. I actually visited the pharmacy -- it's not local, and asked to see their compounding rooms. Very sterile.
Insurance will not cover it ... however I"m pretty desperate for pain relief that doesn't make me loopy or whatever. The electric stuff in my leg makes sleep impossible.
The liquid was supposed to be bitter -- it is, but such a small amount I just toss it back. At this point I chose liquid because too many fillers with the capsules.
We'll see.
I take it. I've been taking it for years for fibro pain. For me it worked well enough that I have not had to do the Cymbalta, etc., thing, which is good because I'm averse to those unless absolutely necessary. Too many side effects.
I hope the dose is OK for you too. I'm taking 4.5mg - I don't know if there are other doses being used out there - and I have found that I can even take opioids in a pinch while on it - because that dose really IS so low.
As an aside, I had no idea until recently, that LDN has turned into a favorite snake-oil du jour - a miracle drug for everything from athlete's foot to lumbago. *eyeroll* I heard about it by accident while watching a presentation on fibromyalgia by Dr. Sean Mackey, at the Stanford Neuro- Imaging and Pain Lab. As part of his larger general presentation on fibro, he mentioned that they had done a TINY study on it, and it looked promising. Naturally, being a good scientist and doctor, he told the audience to NOT get too excited, that this was VERY preliminary and they needed to do a lot more research. So naturally, I asked my rheum about it, and he was amenable to letting me try it. I don't know if it was/is placebo, and since it is just for pain, I really don't care: as long as my pain is down, I'm a happy camper. Go placebo! But I would NOT take it thinking it was going to do anything for MS. But for pain? I feel like it has helped. Of course I'm now on Nortriptyline and Baclofen too, so I'm sure they're doing their part.
I hope it works for you!
I hope the dose is OK for you too. I'm taking 4.5mg - I don't know if there are other doses being used out there - and I have found that I can even take opioids in a pinch while on it - because that dose really IS so low.
As an aside, I had no idea until recently, that LDN has turned into a favorite snake-oil du jour - a miracle drug for everything from athlete's foot to lumbago. *eyeroll* I heard about it by accident while watching a presentation on fibromyalgia by Dr. Sean Mackey, at the Stanford Neuro- Imaging and Pain Lab. As part of his larger general presentation on fibro, he mentioned that they had done a TINY study on it, and it looked promising. Naturally, being a good scientist and doctor, he told the audience to NOT get too excited, that this was VERY preliminary and they needed to do a lot more research. So naturally, I asked my rheum about it, and he was amenable to letting me try it. I don't know if it was/is placebo, and since it is just for pain, I really don't care: as long as my pain is down, I'm a happy camper. Go placebo! But I would NOT take it thinking it was going to do anything for MS. But for pain? I feel like it has helped. Of course I'm now on Nortriptyline and Baclofen too, so I'm sure they're doing their part.
I hope it works for you!
Thanks, Alex. Yeah, I don't imagine it will help progression at all, but since I still don't officially have ms, there are no options for actual treatment.
Cool thing though -- it also has anti-inflammatory properties (link below). Since my neuro DOES admit I have inflammation in my brain, I'm hoping that on all or some levels it will be helpful. Mood, sleep and pain.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
I have dose-related adverse effects to every other painkiller I've tried, so I'm hoping this will work. It seems to work very well in about half the people that try it, and not at all in the other half :P.
Worth a shot.
Cool thing though -- it also has anti-inflammatory properties (link below). Since my neuro DOES admit I have inflammation in my brain, I'm hoping that on all or some levels it will be helpful. Mood, sleep and pain.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
I have dose-related adverse effects to every other painkiller I've tried, so I'm hoping this will work. It seems to work very well in about half the people that try it, and not at all in the other half :P.
Worth a shot.
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In the US I'm pretty sure it's not. Has to be made to order by a compounding pharmacy, and prescription insurance is unlikely to cover it.
I also don't know whether LDN is compatible with the various MS treatment drugs, but hope so. In many ways it sounds helpful, and there seem to be few side effects. I agree--can't hurt to try it.
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